Finally Being Heard: The Upward Battle for a Diagnosis

My story started in September 2012 when I was crossing the street and felt a pain deep in my pelvis that stopped me in my tracks. I couldn’t move, I couldn’t think, I could only feel the pain.At 4:00 AM, I woke up to this deep pain again and texted a friend who came totake me to the Emergency Department (ED). It was a fruitless visit: they didn’t conduct any tests, imaging or otherwise, or do an ultra sound and spent all of 5 minutes with me before they sent me home. When I arrived home, the pain seemed to go away, so I didn’t think much of it.

A couple of months later in November, I started having this and other pelvic pain more regularly. I contacted the pelvic pain department at Kaiser San Francisco, which consisted of two attending doctors, one resident, and one physical therapist.

They scheduled me for an appointment to see the resident two months later in January. When I went to the appointment, she gave me an exam and said my pelvic muscles were loose and that I would benefit from pelvic physical therapy, but I would have to wait until mid-February to seek treatment. I was not a happy camper.

In mid-January I was back in the ED for the same intense pelvic pain, and they prescribed me Percocet (Oxycodone) and sent me on my way, still with no diagnosis.

While waiting for the Kaiser PT appointment, we sought out a second opinion with a pelvic floor PT, which is a rare find as it requires extra training. I went to a PT at theBack to Life Physical Therapy named Amy, before the Kaiser PT, and and had my pelvic floor muscles checked. Contrary to my original diagnosis, I was told that my pelvic floor muscles were extremely tight and were in spasm often. I felt more confused than ever.

I began PT at both Kaiser and Back To Life every week, and it was incredibly painful during and after every single appointment–the PT only seemed to make matters worse.

By mid-March things were not improving in the slightest, so I was put on a nerve pain medication, Gabapentin, that called for a dosage of nine pills per day–I was already on several others and the side effects were starting to effect my everyday functionality. I was working as an after school nanny for a second grader and I had to drive a lot, but with all of these medications I began to almost fall asleep while driving every time. Looking back it was incredibly dangerous, but I didn’t want to lose my job, so I would slap myself across the face to stay awake while driving. It was around this time in late March 2013, that I contacted CrowdMed after a good friend had suggested it. I’m so glad he did because I didn’t know where to turn–it seemed that every new bit of information I was receiving about my potential diagnosis was more contradictory and confusing than the last. I looked through the CrowdMed website and decided that I didn’t have anything to lose by simply submitting my case.

I heard back a week or so later via an email from the founder himself , Jared Heyman, with the results of my case. The majority of the Medical Detectives on my CrowdMed said that I had Endometriosis. I knew it was Endo before I even sent in my case, but this information gave me a leg to stand on. CrowdMed gave me my gut feeling back. At the time, I didn’t know which way was up and had forgotten to listen to my own body and intuition. CrowdMed gave me things back that I hadn’t realized had been taken from me and now I always listen to my intuition.

I however, still needed confirmation from my physicians. I had gone through a procedure in the OR, which didn’t help at all. I had Botox injected into my pelvic floor while I was under anesthesia to stop my muscles from spasming so PT could work, but it did nothing

I was in worse pain than before and so overwhelmed, and I don’t know how I didn’t just say “I’m done.”

On May 8th, 2013, after meeting with what felt like everyone at Kaiser, I had an abdominal laparoscopic surgery to see if any Endo could be found. It was an out-patient procedure and they did not spend very much time looking, maybe an hour from start to finish and only found one growth. I knew by the way that my mom looked at me when I woke up that next to nothing had been found. I was crushed and was crying before even leaving the hospital.

Endo is a bitch, and I knew that there was more inside of me that they didn’t find. I went back to Kaiser for my post-op appointment, and they failed to give me any concrete answers that would lead to my proper diagnosis and/or treatment for my symptoms and most importantly the pain that I was in. CrowdMed offered me more support and information than they had and I was determined to follow through on the diagnosis I knew i had.

I eventually found a book on Amazon called “Stop Endometriosis and Pelvic Pain” written by Andrew S. Cook, MD. I downloaded it to the Kindle app and read it rather quickly. This book spoke to me instantly. Dr. Cook described everything I was going through and seemed to really know his stuff. I found out his office was about an hour’s drive away from me in Los Gatos, CA. I called and within a few days i had scheduled an appointment with Dr. Cook for August 2nd, 2013. The appointment was like music to my ears. He listened to everything I said intently and is one of the nicest doctors I know. I was very comfortable with him and he made me feel heard instead of crazy. He did an exam and a trans-vaginal ultrasound himself and said that statistically speaking there was probably more Endo to be found, but there was no way to know unless we opened me back up. I was up for it, but we had to work a few things out first.

Due to issues of payments and varying family opinions, we postponed the surgeryand finally scheduled it for October 17th, 2013. The surgery was about two and half hours long. Waking up in Silicon Valley Surgery Center after the surgery with Dr. Cook felt infinitely different from when I woke up at Kaiser. I knew he had found something: stage II (six to fifteen) growths of Endometriosis in my abdomen.

Today I still struggle with pelvic pain, but CrowdMed gave me the confidence I needed to say, “HEY, listen to me! I know what’s wrong, please listen to me!”. It lead me to be my own advocate and find the right doctor i needed that eventually lead to proper treatment. I have learned that it isn’t always easy to stand up and be your own advocate, but ultimately, if you know something is wrong, then something is wrong. You know your body the best, so listen. If doctors and medical professionals won’t listen to you, try CrowdMed. It will at least give you somewhere to go from if not so much more.

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Author:
Madeleine Gerlach

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CrowdMed harnesses the wisdom of crowds to help people struggling with unresolved medical issues. On the blog you'll find stories from our community, from patients and medical experts who have seen the best and the worst of modern medicine, and who strive to empower people dealing with the healthcare system.